Veterans' Decision Making for Prostate Cancer Germline Testing After Informed Consent With Their Oncologist: A...

Guidelines recommend offering germline testing to patients with advanced prostate cancer (PCa) to inform treatment and personal/familial cancer risk. We asked whether veterans affairs (VA) patients made informed decisions about germline testing after informed consent discussions with oncologists.

We conducted a mixed-methods study of veterans with advanced PCa at the San Francisco VA. We audio recorded patient-oncologist germline testing discussions to assess oncologist communication concordance with National Comprehensive Cancer Network consent guidelines. Seven days afterward, we administered the Decisional Conflict Scale (DCS) and KnowGene scale to assess decisional conflict and germline testing knowledge, respectively, and interviewed veterans and caregivers to characterize decision making. We separately interviewed VA oncology and genetics providers for their perspectives on veterans' decision making.

Among 41 participants, 35 (85%) agreed to germline testing. The mean DCS score was 25/100 (higher = greater decisional conflict); 19% had scores >37.5, which is associated with decision delay. Recordings and surveys revealed that oncologists often did not communicate, and most patients lacked knowledge about key informed consent elements, particularly about potential harms, testing outcomes, and results disclosure. Interviews with patients, caregivers, and providers identified numerous patient decisional needs (decisional conflict, inadequate knowledge, unrealistic expectations, inadequate support/resources, and complex decision); barriers to patient decision making (inadequate oncologist training/bandwidth, limited access to educational resources, insufficient oncology/genetics workforce, and paternalistic culture); and facilitators (patient-centered communication, caregiver engagement, and trust in VA).

Although decisional conflict about germline testing was low, some patients made uninformed decisions and oncologists did not communicate all elements of informed consent according to guidelines. To promote patient-centered care, we recommend provider training about informed consent and shared decision making, increased oncology/genetics workforce capacity, and tailored patient-facing educational resources.